Ever wondered about the role of genetics in your child’s rheumatic disease? Have questions you’ve been wanting to ask an expert in the field? Interested in meeting other families, including those navigating more rare rheumatic conditions, like Behcet’s, DADA2, Fever Syndromes, JDM and more?
Join us February 28th (Rare Disease Day!) for an informative presentation and Q+A with Dr. Ashish Marwaha, a Clinic Medical Geneticist at Alberta Children’s Hospital with a special interest in pediatric rheumatology. After his overview, you’ll have the chance to participate in disease-specific breakout rooms where you can meet and learn from other families and youth. Have a specific question for Dr. Marwaha? You can let us know during registration!
This session will also be interpreted live into French.
Medical Speaker:
Dr. Ashish (Ash) Marwaha is an early career clinician scientist and clinical medical geneticist focusing on complex immune dysregulation disorders. He has used a collaborative approach to build an integrated research care pathway that aims to diagnose the cause of rare diseases and lead to improved targeted treatment. His research expertise includes whole genome sequencing, RNA sequencing, polygenic risk score analysis, epigenomics and machine learning integration of multi-omic data. He ultimately wants to use his extensive clinical trial experience to implement precision therapy for this patient population.
Guest Emcee and C+F Parent Leader:
Sara Ethier has three children, one of whom is a child with a rare autoinflammatory disease. She discovered Cassie + Friends through the Alberta Children’s hospital in the hopes of finding support and resources to navigate the difficulties of parenting a child with a chronic and rare health issue.
Based out of Calgary, Sara is a member of the Canadian Systemic Autoinflammatory Patient Advisory Group (Can-SAID), a branch of Cassie and Friends (C+F’s). She recognizes the need for families to find connection, support, and information as they deal with the unique experiences and challenges of their autoinflammatory journey. An adjunct instructor in Communications and Liberal Arts Studies, Sara is personally interested in the power of storytelling as part of advocacy efforts to foster more awareness and understanding of these diseases and the impact they have on children and their families.
C+F Parent Leader:
Liz Devens knows all too well what it’s like to grow up with JIA- she was diagnosed at the age of seven. Years later, her son Jason was diagnosed when he was less than two years old. Could this be genetic? Their journey of genetic testing, the frustrations and ultimately their findings help shine a light on the the importance of genetic testing for childhood rheumatic disease.
